Tuesday, October 31, 2006

Joe Barton was voted out of office on Tuesday. Perhaps you can find him wrapping chalupa's at the Richardson TX Taco Bell come January.

Here are the contact numbers for Joe Barton, Republican Congressman in Texas. Take 2 minutes - call his office and just tell him that denying access to a constituent is wrong - and stomping out the unanimous Senate vote for the Combatting Autism Act by refusing to release the bill to the House for a vote (there are enough votes in the house for it to pass) is playing GOD with our legislative system.

What is MAKING him hold onto this bill? What pressure keeps him from keeping his word to Suzanne Wright of Autism Speaks? No politician would put himself through the public excoriation Barton is getting without someone holding a very large GUN to his head. So, what is it that's WORSE for Barton than being tossed about the Internet like the cheap gal at the saloon? I'd like to know. Money? Some horrible secret? Someone's got something on him.

Please, for my 6 year old who can not say "Trick or Treats" and the 1 in 166 autistic kids in America's sake -- call his office.

Washington Office2109 Rayburn BuildingWashington, DC 20515(202) 225-2002(202) 225-3052 fax

Arlington Office6001 West I-20, Suite 200Arlington, Texas 76017(817) 543-1000(817) 548-7029 fax

Ennis Office2106 A W. Ennis Ave.Ennis, Texas 75119(817) 543-1000(972) 875-1907 fax

Crockett Office303 N. 6th St.Crockett, TX 75835(936) 544-8488



Anonymous said...

If the Combatting (sic) Autism Act reflects its name, I am dead set against it. As an adult diagnosed with a form of autism I can assure you that there is nothing to "combat". The name of this act sounds horribly like that awful organisation called "Cure Autism Now!" There's nothing to cure. Autism goes to the core of what we are. Indeed, the only way to "cure" autism is to destroy us...so you might as well call the organisation "Kill Autistics Now!" Actually, a better name should be "Cure autistic parents who have no idea who their kids are now".

Kim Stagliano said...

If you are so proud why are you hiding behind Anonymous? I know that my girls are beautiful, glorious children who are TRAPPED inside THEIR version of autism. You can read, write and are well spoken -- I'm glad for you. My kids can not, yet, and I'd like to find out why and how to help them recover their voices. I wish you well. I won't win my battles by going after you. Not my style. Next time have the courage to use your name, won't you?

And give my love to the Autism Diva.....

Allison said...

Well at least you are at a point where you can voice your opinion. Asperger's is not my son's Autism. His Autism is painful toxic smelling explosive stools, severe food intolerances, autoimmune difficencies, metal intolerance, chemical intolerance, inability to speak to me about anything he needs or wants. Or when he hurts where to put the bandaide (he is petrified of bandaides). Your kind of Autism is the kind I am fighting for my son to get to. Until we treat him for his medical problems and find the mystery of the right combination of things to treat his mercury poisoning after vaccination, he will not be able to express himself as you have. So I as a mother will do everything possible to fight for him!!! Getting our children to independance is our ultimate goal. Obviously you are already there, great for you but no help to my son.

Petra said...

Hell, my son's autism is Asperger's. And I will still fight until my dying day for him to leave the constraints that disorder is placing on him behind and live the full life he's entitled to.

And not for a moment do I buy into this crap that trying to treat his disorder goes to trying to change the core of what he is. WHO he is is a wonderful, smart, caring little boy. WHAT he is is a little boy that is severely limited by his disorder to fully show the world WHO he is and WHAT he has to offer. Let's not confuse the person with the disorder. This to me is like saying that wanting to treat diabetes goes to wanting to change the core of what a person is. What nonsense, I haven't heard anybody likening the cure diabetes organizations to "kill diabetics now". Because that would be plain old lunacy. And it's just as insane to compare wanting to help an autistic child lead a better, higher quality of life with killing that child.

Yes, I am fortunate. My son can talk, he can write, he can tell you all about the social structure and hierarchy of a wolf tribe, he can tell you about the 18 million species of shark and which water conditions they prefer. But this same child is only now learning to use these communication skills to tell me when he hurts physically (as opposed to walking up to me and kicking, punching or biting me, or kicking another hole in the wall, or trying to choke his little brother as the physical pain he is experiencing is overwhelming him) or to tell me that it hurts emotionally when the other kids at school won't play with him because due to his sensory and motor skill issues he can't kick the ball as hard or high as his class mates (8.5 year old neurotypical boys are BRUTAL), or due to his difficulties in navigating the unspoken rules of society he doesn't 'get' the rules of playing.

Indeed anonymous, you are fortunate that you are comfortable with WHO you are and that you can so eloquently express that. THAT is exactly what I want for my son. But that ain't going to happen by just accepting his disorder, it is only going to happen if I continue to fight with everything I've got to make sure he and other kids afflicted by autism get the attention and care they need.

Anonymous said...

Dear Kim,

Thanks for your feedback...but you shouldn't sound so defensive; this isn't an "us" and "them" situation although, gosh, 99% of my empathy lies with your autistic kids rather than the descriptions of your oh-so-harried life keeping their extremities within the confines of your shopping cart as you flail down the aisles of Wal-Mart.

Yes, I agree with your observation that I should post with my own name rather than "hide" behind the "anonymous" moniker. I do that for professional reasons. The few times in business situations that I have shared my condition have, unfortunately, not been beneficial to me. Like yourself, almost all NTs have no idea what the inner autistic life entails. Indeed, I joined an adult autism support group on-line with my real name and before I knew it, it was coming up as the first hit under a google search. So I choose to remain anonymous and I will appeal to the unbounded capacity that liberals claim for themselves to be tolerant, loving and understanding as to why I do so (I assume your political persuasion from your huffpo comments).

I would like, however, to remind you that when you set up your blog, the software gave you the choice to allow or disallow for anonymous posters. If you have an aversion to anonymity, you shouldn't have allowed it in the first place. By doing so, Kim, you put people like myself in the uncomfortable position of defending choices which you yourself enabled.

I have no idea who the "autism Diva" is, so I can't comment on that.

Laura said...

Anon, I for one was very offended by your sarcastic comment: "oh-so-harried life keeping their extremities within the confines of your shopping cart as you flail down the aisles of Wal-Mart."

Being a parent of ANY child is hard, autism or NT. I have both, and I know. I keep a blog where I frequently write about my "oh-so-harried life" to vent and get feedback. Your holier than thou attitude that we parents are doing a disservice to our children with Autism by devoting our lives to helping them is not any help to anyone. I know who my child is, and I know that he has medical issues that I can help. I'm glad you're able to communicate so eloquently, but the reality is, if the Combatting Autism Act isn't passed, many of our kids with Autism will not have to chance to learn to communicate at all.

Anonymous said...

Hi Laura,

I'm sorry you got the impression that I feel that autistic parents "are doing a disservice to their children...by devoting their lives to helping them." On the contrary, I admire the love and devotion that NT parents provide their autistic children, something I see at autism functions all the time. Indeed, I think it's wonderful that you chose to both provide your womb as host to the creation of an autistic as well as the subsequent feeding and caring of such. From my perspective, you were provided with a great privilege to create one of "us" and I thank you for taking on the task.

But, you see, in the not-too-distant future, Laura, you may become a very rare creature, indeed.

The comments in my original post meant exactly what they said: IF this Act (which I have not read or familiarized myself with...or I wouldn't have used the word "if") reflects the horrible name legislators have given it, then this Act -- just like the "Cure Autism Now!" group -- and the people and parents behind it are the true enemies of autistics. It is THEIR attitude that needs an overhaul, not mine.

We are on the threshold of discovering the gene(s) responsible for autism. When that happens, pre-natal testing will provide prospective parents with the very real choice of either having autistic children or aborting them.

The indisputable fact is that the only sure-fire way of "combatting" or "curing" the autistic condition "now!" is not to let it be created in the first place...and that clearly means not letting autistics be born in the first place.

Please, then, understand how incredibly insulting words the employment of such words are to those in MY community because the incontroveritle implication is: we don't want your kind to exist.

Imagine, Laura, a prospective mom and dad in the year 2008 who have just come back from the pediatrician's office where they were given the results of their pre-natal test and told mom was carrying an autistic child. Still in shock, they go on to the internet to educate themselves more as to what this whole autistic thing means. They come across the website of a mom of three autistic kids whose online descriptions of her "harried" life paints such a bleak and dreary picture of what the next 21+ years of their lives will entail should they choose to bring "it" to term. And the descriptions are much, MUCH worse than just shopping cart experiences and stares from neighbours that Ms. Stagliano and yourself has taken offense with me for invoking.

What kind of clinic do you think these prospective parents will visit next, Laura?

Hey, this Combatting Autism Act may be a great piece of legislation for all I know...as I indicated in the very first sentence I wrote on this forum, I am simply not familiar with it. What I'm saying is: the name indicates a most horrible and despicable attitude and, yes, it is quite sinister in its implications...indeed, it reeks of Auswizchian connotations.

And as fantastical as it may sound to you, I am utterly convinced that once potential hosts (i.e. you parents of autistics) start aborting us, you will be destroying the very source of the creativity and innovation that drives human progress and evolution. We are, quite literally, the very mutation that makes evolution possible in the first place.

Laura, would you have allowed Bill Gates to be born? How about Stephen Spielberg (someone who has publicly stated his Asperger diagnosis)? Please take a look at this article:


So, I'm sorry that your sensitivities were ruffled by my observations of an autistic parent's descriptions of her "harried" life but dealing with the ideosyncronies of autistic parenting don't stand up to the prospects of ending the idea that that child shouldn't have existed in the first place. Because, you see, MY sensitivities were ruffled by the callous indifference to my very existence resulting from YOUR community's employment of the words "combat" and "cure".

Kim Stagliano said...

Anonymous, I see where you're coming from a little better now. When I became pregnant with my third child my OB knew my two daughters were autistic. He explained to me, professionally, with heart and with genuine care for ME that I had a "choice" with this pregnancy. I HAVE three children, so you know my choice.

Autism is like ice cream -- lots of flavors. I simply want to help my girls be able to use the bathroom, I long to hear my little one say "Mom", I want my oldest to understand that the street is dangerous. My kids are SO far apart from your version of autism. I don't want to take away my kids souls, anonymous, I want to give them a voice. THERE IS A DIFFERENCE. I hope you understand me (and Laura) a little better now too.


Laura said...

Anon, I can totally see where you're coming from. I don't want to stop kids with Autism from being born. I want to help the kids who have Autism, including my own son, to have as much of a "normal" life as possible, while still maintaining his own personality. I'm sure he has the potential to be a brilliant contributor to sociate, but I want to make sure he is able to communicate effectively so others can understand his future brilliance. :) I want him to have the chance to devote his life to doing whatever he wants, and to be healthy, and not in pain from intestinal issues, and to have a healthy immune system. I really believe that my NT son has the "gene" for autism, but because his young body wasn't assaulted by as many toxins as his brother's was -- vaccines, cow's milk, viruses that an already-taxed immune system couldn't handle -- he didn't develop ASD, or if he has anything, he'll be on the high functioning end of the spectrum. I in no way would ever condone the killing of Autistics or immediate aborting of children with the "gene." I think the gene that was just discovered actually has some good potential to help come up with possible "cures" for the immune system and intestinal dysfunction many with ASD have. But it's possible to know in advance about Down's syndrome, now, yet many people decide to have their babies. And if I were to have another child, and the doctor warned me it had the gene, I believe I would still have that child. I love my sons equally, and would love any other children, Autism or no.

Oh, and my friend has a "recovered" child, who has been cured of Autism through biomedical treatments. Her son no longer has the symptoms Autism, or certain stims he once had, and now communicates very well, but I can tell he's still a bit "quirky." That's what I want for my own son. To be able to function in society, but maintain his own quirkiness and wonderful personality.

Jackie T. said...

The ability to use the bathroom, communicate effectively and understand the road is a dangerous place? I'd be happy to get those things out of a husband...and I've been married for 11 years!

Allison said...

Well we can definitely agree on this. There also will never be 1 gene found responsible no matter how many people would like to peg it entirely on genes. You are right, they would be guessing. Not to mention completely ignoring the environmental factor(s) that trigger the body to express the whole body Autism symptoms. My son has been a gift of extreme love, understanding and knowledge. I am blessed by him.

Daniel Szyper said...


You asked me to look up the thread you sent me and I have done so. I have also looked up the Combat autism bill online to read what it actually says, so here it is. As an adult on the spectrum, I find rhetoric such as "war on autism" every bit as inflammatory as a gay person would find "war on homosexuality" inflammatory. Unlike homosexuality, autism is not a lifestyle choice. But like homosexuality, it pervades ones hopes and dreams, likes and dislikes, thoughts and fantasies completely. And like homosexuality it is heavily stigmatized. To wage a "war on autism" is to declare war on my fantasy life, and thus to void me completely as a human being. Below is the exact wording of the bill:

Why It's Important for Your Legislator to Become a Co-sponsor
This bill will accomplish the following goals in the fight against Autism:
Double NIH spending on autism research.
Empower the Director of the NIH to act as an "autism czar" - developing an annual research budget on autism, based on the best science, and requiring that budget be reported to Congress.
Create a screening program in all 50 states for the early identification of children with autism - short of a cure, early identification leading to early intervention with behavioral services provides the best available outcomes for autistic kids.
Fund the efforts of the Autism Treatment Network to identify the best medical practices in the treatment of autistic kids.
Continue funding of the epidemiological and public education programs on autism at the CDC.
Authorize, overall, nearly 1 billion of federal spending on autism over the next 5 years - a multi-front war on autism from public awareness and early diagnosis to basic biomedical research.

Daniel Szyper said...

Combating Autism Act
From Wikipedia, the free encyclopedia
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The Combating Autism Act (United States Senate Bill 843), introduced by Senators Rick Santorum and Christopher Dodd, is a proposed legislative measure that would authorize significant expenditures, over the next five years, to combat autism through screening, education, early intervention and prompt referrals for treatment and services. The Act would also provide money for the Centers for Disease Control (CDC) to conduct epidemiological surveillance programs and would re-authorize the Interagency Autism Coordinating Committee (IACC) to coordinate all efforts within the Department of Health and Human Services concerning autism, including activities carried out through the National Institute of Health (NIH) and the CDC. The House version was introduced by by Congresswomen Mary Bono and Diana DeGette.

The Combating Autism Act would allocate approximately $900 million in spending on autism over the next five years, approximately doubling expenditures on existing programs; this would include a significant increase in spending for biomedical research in autism.

The Act also creates a legal requirement for the Centers of Excellence in Environmental Health and Autism to research "a broad array of environmental factors that may have a possible role in autism spectrum disorders." These Centers are authorized with funding of $45 million over the five-year life of the bill.

As of October, 2006, House Energy and Commerce Committee Chairman Joe Barton (Texas) has has refused to release the Combating Autism Act from his committee for consideration by the full House of Representatives this session.[1] The bill has already been passed, unanimously, by the Senate.

[edit] Provisions
The Act requires the director of NIH to develop and implement a strategic plan for autism research and a budget to fund this plan. The plan and budget would have to take into account recommendations of a public/private committee, the Interagency Autism Coordinating Committee, which itself would have to include at least one-third public members, a person with autism, and a person who is the parent of a child with autism. The act would provide grant programs for states to develop autism screening, early diagnosis and intervention programs for children.

The act would also authorize:

The Director of the NIH to create an “Autism Czar”, who would coordinate NIH based-research and oversee development and budgeting of autism research and would increase the number of Centers of Excellence on Autism from eight to ten while also creating three Centers of Excellence on Environmental Health and Autism.
An information and education program and its risk factors to be provided by the Department of Health and Human Services (HHS) to health professionals and the general public.
Commitment of $75 million a year by the Health Resources and Services Administration (HRSA), for each of the next five years, for grants for states to develop autism screening, diagnosis, and intervention programs, and to create statewide screening systems to ensure all children are screened for autism by the age of two.
$25 million a year, for five years, for technical assistance and data management to states for autism screening, diagnosis and intervention programs.
The Act would reauthorize, for five years, the $12 million annual funding for the epidemiological surveillance program for autism, overseen by the Centers for Disease Control’s (CDC).

[edit] External links
CombatAutism.org - 'Combat Autism: It's time for Washington to pass the Combating Autism Act of 2006'
MedicalNewsToday.com - 'Cure Autism Now Celebrates Senate Approval Of Combating Autism Act Of 2006' (August 6, 2006)
UPI.com - 'Something Wicked (part 1): The Combating Autism Act passed by the U.S. Senate earlier this month includes millions of dollars for research into possible environmental causes of autism', The Age of Autism, Dan Olmsted, UPI (August 16, 2006)

kathleen said...

The Autistic Distinction
on the occasion of Gayle Fitzpatrick and Charles Rankowski vs. Town of Falmouth

by Kathleen Seidel
Society often ostracizes those whose existence, behavior and experience counters simplistic, unexamined assumptions and expectations. Members of a cognitive minority who frequently interact with people whose perspective is grounded in a significantly different neurological configuration, autistic citizens are often misunderstood and condemned for their difference.
For autistic people, social, emotional and communicative development take place on a more extended time scale than for the neurologically typical. These are inherently challenging areas for which accommodation must be made if we value human diversity and the virtue of compassion.
Autistic people cannot reasonably be expected to exhibit personal qualities and behavior identical to that of their typically developing peers. When difficulties arise, intelligence, compassion and humility are in order, not arrogance, negative judgment and contempt. An autistic person should no more be held at fault for eccentric or challenging behavior in a social environment than should a visually impaired person be held at fault for difficulty navigating an unfamiliar environment. It is inherently discriminatory to scrutinize a person with a cognitive or sensory difference, then to penalize them for the very challenges that accompany that difference. It is unconscionable to employ governmental power in an attempt to enforce such discrimination. It is inaccurate and disgraceful to suggest that contact with persons with cognitive difference poses a threat to others. It is particularly inhumane to inflict such damning judgment upon a child.
Neurologically typical individuals often misconstrue an autistic person's behavior or intentions, since we are socialized to assume that all humans share common cognitive and emotional attributes unless we are exposed to difference from an early age. It has become increasingly apparent over the past half-century how incorrect this assumption really is, and how much suffering has occurred as a result of it. The flawed nature of scientific progress notwithstanding, the proliferation of diagnostic categories for behavioral "disorders" reflects, in part, a collective desire to understand the variety of human experience. Sadly, discussion of this variety tends to be freighted with the assumptions of psychiatry and traditional educational institutions, which too often throughout history have served as agents of social control rather than facilitators of human development. Too often and too shamefully they have defended the philosophy that those whose development takes an unusual path, whose dependency needs are greater than others, and who do not function efficiently in the prevailing socioeconomic environment, are inherently defective and inferior. The language of pathology is the language of invidious comparison insofar as it focuses on "abnormality" and "deficit" defined in relation to a far-from-universally-applicable standard of functioning.
Those who value compassion must work to change the content and tenor of public discussion about cognitive difference. We must consider the values and attitudes that shape our responses to autism so that we can improve our relationships with autistic people, and help promote a climate of mutual respect in which we can all thrive. We must consider the negative impact on autistic citizens of the popular practice of referring to autism as an "epidemic," a "tragedy," a "plague," a "devastating scourge," a "catastrophe," or a "demon;" of the use of military metaphors such as "killing," "attacking" or "defeating" autism, and description of autistic children as "prisoners of war;" of comparison of autism with degenerative diseases such as cancer and diabetes; of the use of verbs such as "fester" to describe the autistic pattern of human development. Indeed, recognition of autism in a family member has a deep impact upon the entire family, and the challenges inherent in supporting people with challenging behavior are profound. Many parents experience the unveiling of autism as a grievous revelation. However, I am convinced that the negative impact on families and on autistic persons is increased and perpetuated by crisis-oriented descriptions of autism that focus on abnormality and deficit, that automatically characterize early education as a heroic "intervention" if the children being educated are autistic, that raise the specter of institutionalization simply because that is the way society has tended to address cognitive difference in the past, and that describe autism as something that must be destroyed.
Assertions that autism can and must be "cured" create unrealistic expectations, promote the exploitation of parents made desperate by dire predictions, and perpetuate a climate of negative judgment towards children and adults who are not or do not strive to become "indistinguishable from their peers," those who look and behave like the autistic people that they are. The insistence that autistic citizens must modify harmless idiosyncrasies for the comfort of others is unreasonable and oppressive. Such idiosyncrasies often serve a productive purpose for the autistic person. Placing the burden of adaptation on autistic citizens only serves the purpose of enabling others to avoid the discomfort of confronting their own fears, their vulnerability, and their destructive attitudes towards difference.
We are living in a time when many adults have recognized their own autism. Concurrent with this expanded awareness, the Internet has offered autistic citizens unprecedented opportunities to communicate and to establish relationships in a manner suited to them. The experiences of autistic citizens from childhood to adulthood are conveyed in hundreds of autobiographical writings available in print and online. These must not be casually dismissed or trivialized as "isolated accounts" or "anecdotes." The fact that an autistic person chooses to communicate must be respected, rather than cynically regarded as an invalidation of their autism or evidence of self-aggrandizing intent. The fact that an autistic adult has acquired skills since their childhood and has developed over time should also not be regarded as an invalidation of their autism. The testimony of autistic citizens must not be disparaged because of their diagnostic status or presumed level of mental stability. The revolution in the capacity of autistic citizens to communicate their experiences, needs and desires renders outmoded concepts of autism that focus only on incapacity rather than development and constructive adaptation through the lifespan, and that are based solely on observation of individuals who have been subject to lifelong professional scrutiny and speculative interpretation.
I seek a reconceptualization of cognitive difference, to the end that those who bear now-stigmatizing labels of "deviance," "disorder" and "syndrome," may live and manifest their individuality, distinctive interests, gifts and capacities with integrity, in a manner that comes naturally to them, free of pressure to become people they are not, free of the automatic assignation of inferior status; and that they may enjoy the respect of their fellow citizens, rather than disdain and exclusion.
Retrospective consideration of the lives of exceptional human beings offers credible evidence that the autistic distinction has persisted throughout history, and has been a valuable element of human culture. Genetic research indicates that at least twenty different genes can signal a predisposition to autistic development; autism is pervasively embedded in the deep structure of humanity. Psychological research indicates that autistic characteristics constitute an identifiable pattern of traits that are present in varying degrees throughout our entire species.
Autism is as much a part of humanity as is the capacity to dream.
20 August 2004

Frank said...

Autism has often been referred to as a monster, as a horrible thing that comes and steals the child in the dark of the night, leaving behind just a shell. I cringe whenever I see autism described like that, because I know what that sort of imagery means to many parents, and how easy it is for parents of newly diagnosed autistic kids to get swept up in the "war" mentality. The concept of autism as a monster fosters a hatred of autism, and hatred does not help people to make good, rational decisions.

When a parent embarks in a "war" on the autism beast, it soon becomes clear that the total destruction of the beast is the ultimate goal. Even if the parents know that autism is not curable, the total death of the autism beast is a wish they keep in the back of their minds. They can imagine nothing less, so great is their hatred of the beast. As they see it, destruction of the autism beast would mean that the normal kid that they expected to have, that they sometimes thought they had before the child "regressed," would be freed, and all would be well.

When one has that mentality, life becomes a series of battles against the beast. War is hell, they say, and I am sure that parents that are prosecuting this war against autism would tell you that hell is an apt metaphor for what they are going through. So would the kids, I am certain, say that, if they could.

The problem with this vendetta borne of hatred for the autism beast is that you cannot wage a war on a part of what the child is without also hurting the child. No matter how much anyone wants it to be so, the fact is that autism is not seperable from the whole of the child; there is no "shell" of autism surrounding an innately normal child. There is no seperate entity called "autism" that, if it were destroyed, would allow the child to be normal. Autism is a function of someone having an autistic brain, and you cannot fight the autism separately, any more than you could fight the femaleness of a girl but not hurt the girl herself.

Autism fools people. They think that because they (the parents) are (ostensibly) normal, and that since their child may have appeared normal for some time, that the child really is innately normal, and that he was normal, until autism struck. Science has shown us that this is not so. Infant monkeys were given specific brain injuries in a part of the brain associated with autism, and even with those injuries, the monkeys appeared to develop normally-- until a point. When the monkeys were developmentally ready to start using the part of the brain that had been injured, they then began to act very differently than the normal monkeys of their brood.

Autistics are not monkeys, of course, but the parallel is strong. A part of the brain can be abnormally configured prenatally (before birth), and when that child is born, he may seem quite normal, since the abnormal part of the brain has not been used yet. When he develops to the point where the abnormal part of the brain is activated, he then may appear to withdraw, to lose interest in others, and to show other autistic traits that had not been seen in that child before. There was no beast that came in the night and hurt the child-- this is, in fact, the child that was always here.

The hatred of the autism beast, and the overwhelming desire to defeat it, leads many parents to think that accepting the autism and parenting the child as he is, would be the same as giving up, or giving in to the beast. It would be seen as failure. Peer pressure from other parents would be strong; normal parents seem to be very much concerned about how they are perceived by other parents, and none wants to appear like he or she is not doing everything possible to slay the beast.

When one is stressed beyond belief, and has feelings of guilt for having had an autistic child, and has the "war" mentality, it is almost impossible not to project their own feelings of hatred for autism onto the child. Parents describe their fight against autism, very often, as the child's fight against autism, and they think that anything they do to fight the autism is almost automatically the best thing for the child. The child, though, is not waging war on autism; that autism is simply who he is. The hatred his parents have for autism, though, often prevents them from ever seeing that.

A "war" mentality is not required to help an autistic child. There seems to be a peculiar idea out there, that the only alternative to full-on war against autism is total neglect. That is what is known as a false dichotomy. I have not met any autistic advocates that promote total neglect. I, for one, am glad that I am able to communicate, and I would certainly not deny that to any autistic. That is just one example among dozens.

Calling an end to the war does not mean giving up on the child-- not by any means! It means recognizing that the child is not normal, that the child is not going to be normal, and that this is okay. It means loving and appreciating the autistic traits as well as the normal ones, because they ALL are part of who the child is. It is folly to pick out the normal traits and say that "these are who my child is," and to pick out the autistic ones and say that those are just the symptoms of autism. The autistic is the sum total of all of his traits.

I advocate parenting the autistic child, and doing everything that is humane and appropriate that helps the autistic child to learn and develop. I advocate that parents act to help every autistic child to be the most capable autistic person that he can be.

It's not "giving up" to stop trying to defeat the autism-- it's accepting the child as a whole. If people worked on helping autistic kids to learn in ways that are designed for autistics, and in finding ways to get around the various barriers that autism can present, then I am sure that autism would not be as disabling as it often is.

People have often written to me and said that it would be great if their child was as high functioning as I am... that if their child was like me, they would not necessarily want to cure him, but that it is different with their child. Acceptance of autism is fine, in other words, if the person is not severely disabled by it, but for those that are more disabled, curation is warranted as a goal. I have to wonder, though: Does anyone really think that having his parents accept him for who he is, for what he is, ceases to be important if that person is "lower functioning?"

I can tell you from experience that being allowed to be what I am has been vitally important, and has allowed me to function in normal society to a much greater degree than I would otherwise. Why would that not also be so for people that are like me, but who cannot talk, or take care of themselves? Is there really a point at which acceptance of who someone is would not benefit them?


Kim Stagliano said...

I think you guys are all pretty amazing. Just thought I'd tell you that.


Kim Stagliano said...

I still go back to my original thought -- Autism comes in many flavors. The folks who were able to post here so eloquently got the chocolate butter pecan with a cherry on top flavor. My kids got the smelly socks moldy cheese underarm flavor. Get it? And I do think that there is a new "environmentally" induced autism versus a classic genetically preprogrammed autism that has been with us for far longer than the epidemic of the last 15 years.